Celiac.com 05/06/2008 - In the majority of people with celiac disease,
strict adherence to a gluten-free diet can result in a quality of life
that is on par with non-celiacs. Still a small percentage of celiacs
seem to suffer from persistent gastrological discomfort in the form of
irritable bowel or irritable-bowel-like symptoms. Very few studies have
been done on persistent gastrological problems in adults with celiac
disease. Those that have been done rely upon univariate statistical
analysis in clinical samples at the secondary or tertiary care level
and fail to assess the potential influence of non-celiac disease
specific factors, which are considered to be a risk factor of irritable
bowel syndrome (IBS), such as mental disorders, or gender.

A
team of researchers made up of doctors Winfried Hauser, Frauke Musial,
Wolfgang Caspary, Jurgen Stein, and Andreas Stallmach set out to
determine rates of irritable bowel syndrome, irritable bowel
syndrome-related symptoms, and consecutive health care-seeking behavior
and their influence upon health-related quality of life (HRQL) and any
conceivable bio-psychosocial factors influencing adult patients with
celiac disease. The research team made a medical and socio-demographic
survey of 1000 adult celiac patients from the German Celiac Society by
post. The medical portion of the survey included bowel history. The
team also had patients fill out a Short Form Health Survey (SFHS),
along with the Hospital Anxiety and Depression Scale.

516 of
the questionnaires came back completed. Respondents were similar in
gender ratio and median age from the whole membership directory of the
German Celiac Society, a group of more than 18,000 people who reported
suffering from celiac disease at the age of 18. Of these, 213 (41.3%)
had a diagnosis of celiac disease that was made by a duodenalbiopsy,
37 (7.2%) by serological tests (celiac disease-specific antibodies), 34
(6.6%) using stool tests for trans-glutaminase antibodies, and 232
(45.0%) using intestinal biopsy and serological tests.

A total
of 446 patients indicated that they had biopsy-proven celiac disease. Of these 446
patients, 18 were excluded because they indicated adherence to a
gluten-free diet for less than 1 year. Sixteen patients were tossed out
because they reported a major non-adherence to the gluten-free diet. Thus,
the study group was confined to 412 patients with self-reported
biopsy-proven celiac disease who were on a strict gluten-free diet for at least one year. The survey showed that out of these 412 patients that met the criteria, 96 patients, or just over 23% met
modified Rome I criteria for Irritable Bowel Syndrome. Of those 96
patients, 76 patients, or nearly 80%, made an effort to get help, both
medical and non-medical, as a result of the bowel symptoms (we’ll call
the patients who sought help "irritable bowel syndrome patients").

The
results of the study seem strengthen the bio-psychosocial model of irritable bowel syndrome, in which biological and psychological factors
are understood to affect the clinical manifestation of celiac disease.
Under this model, irritable bowel syndrome-like symptoms in adults with
celiac disease are understood through a combination of clinical and
socio-psychological mechanisms. This model leads doctors to an
understanding of celiac disease and other gastro-intestinal ailments
that goes beyond simple biological or psychological factors alone, and
looks at factors like adverse life events, stress, and hypochondriasis
among others.

The results of this study
also support the need for further investigation to determine exactly what
factors contribute to the bio-psychosocial model of what is called
’celiac irritable bowel syndrome.’

In the event that the right psychotherapeutic
treatment for irritable bowel syndrome-like symptoms and/or mental
disorder serve to improve reduced HRQOL in adult patients with celiac
disease and irritable bowel syndrome-like symptoms, it might be
necessary to take a second look at interventional practices.

So,
in a nutshell, this all means that things like mental health, gender,
and other non-clinical factors might play a role in irritable bowel
syndrome-like symptoms in people with celiac disease, and that further
study is needed to sort out all of the possibilities and determine if
there might be better ways to treat celiac disease that will reduce or
eliminate irritable bowel syndrome-like symptoms.

Jefferson Adams

Jefferson Adams is a freelance writer living in San Francisco. His poems, essays and photographs have appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate among others.

He is a member of both the National Writers Union, the International Federation of Journalists, and covers San Francisco Health News for Examiner.com.

8 Responses:

Many of us have found that other foods are producing IBS. There is no mention of whether the study looked at whether the folks who continued to have IBS symptoms were assessed to find out if perhaps casien or soy might be a factor in the continued discomfort. There is also the assumption among most medical professionals that things that are put onto the skin, such as shampoos and lotions etc. are safe no matter what is in them. How many of the study group were still using gluten containing personal care products? Also many of us suffer needlessly because our medications are a gluten source. Many trust pharms and their doctors to know if something is safe and as a result have long standing contamination from items such as supplements, over the counter meds, prescrition meds, wheat germ oils, alcohol and vinager and other items that are thought to be safe that in the reality are not. For folks that have neuro impact in the celiac spectrum of disease adherence to a gluten free diet is often not enough to stop the autoimmune process that is inflaming the brain and blood. They need to avoid the items that many of us are taught are 'safe by processing'. Many who continue to have issues will achieve resolution by ferreting out the other items we are forming antibodies to and becoming zero tolerance strict with the gluten-free diet. Something doctors don't seem to think many of us can do. IBS is not a diagnosis, it is a symptom. Unfortunately in our pharmadriven society there is too much of a rush to label and not enough time spent looking for the cause of the symptom. It is unfortunate that many doctors and researchers seem to ignore that the impact of your body fighting a substance that it considers poison can result in neuro impact. The depression and anxiety are too often a symptom and not a cause. The rush to medicate folks for depression rather than find the physical trigger for it keeps many of us suffering for years.

People with Celiac may have other food intolerance, and food allergies. They can cause GI problems, if ingested. Doctors usually ignore this fact, and push mind altering drugs on people who don't need them. I have been allergic to corn all of my life, as well as other foods and sulfites. If I accidentally eat any of them, because they are not properly labeled in food products, I get sick. Mind control drugs would not help. Avoidance of the problem food is the only thing that does help. This is not rocket science, but is ignored by doctors.

Interesting, but no one has proven that the link mentioned in the article is a causative one. It seems almost useless to include 'anxiety' and 'depression' as mental health disorders when they are also common characteristics of people who are sick and have not been diagnosed or helped yet. Has anyone conducted a study yet to find out how often 'anxiety' and 'depression' are present in people with undiagnosed illnesses? Would be hard to construct - but a good contribution to science.

Gluten and/ or lactose intolerance in infants would cause extreme pain and untreated would lead to helpless or dissociative reactions which would lead to parents responding less lovingly and more fearfully. Allergies treated with dulling antihistamines would also lead to maladaptive cognitive functioning and, without sharpness and persistence, it is VERY DIFFICULT to get a doctor to look into intestinal symptoms, fogginess, etc. I shudder to think how many 'mental problems' started out as reactions to abuse and gluten abuses us without visible bruises. Think of the 'shame' of gaseousness and how a child might feel in school. Combine IBS symptoms with periods and having to sit still for 8 hours. I could go on and on. Pain starts the cycle.

After my daughter went on a gluten-free diet she improved immensely; however within six months she was having stomach problems again. Her pediatrician said it was IBS. We followed the recommendations for this condition, but it was soon apparent this was not helping. Thank God for a Naturopath Doctor who identified other food allergies that were upsetting her intestines (soy, milk, eggs). When these were eliminated, she was a happy gal again.

There is legitimacy to the issues raised in this article. I propose inhaled dermatitis or irritable bowel triggered by handling gluten items - I own a restaurant and exposure to large amounts of gluten has sent me home with a stomach ache and skin rash.

I was almost convinced that I was a hypochondriac until I discovered it was gluten that was causing the multitude of symptoms that had afflicted me for over 25 years. When doctors don't have an answer, they make you feel as though you are inventing the problem. May be they don't listen to females or take them seriously and attribute their continued symptoms of IBS as female traits or manifestations of mental illness instead of recognizing their own biases have led to the demographics of the statistics in the first place. What drug company funded this study?

Women always lose out. That's why I try not to listen to my male doctors. I'm sick but I'll continue to search for the real answer. I wish men realized we are not inventing these symptoms. Women simply suffer more than men. Thanks for the encouraging article.

In Celiac.com's Forum Now:

I think you need to take a little time to learn about DH and celiac disease. Celiac and DH are technically autoimmune disorders. This is about DH:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/
Learning about celiac disease (overview):
...

I mean I might get a prescription refill, or a new vitamin pill for example, and take it for awhile, with absolutely no symptoms. As we know, no symptoms does not mean no damage being done. I will feel fine for weeks, but then I start feeling awful, like a bad flu coming on. I never did get t...

I think, at least from my personal experience, that these tests are accurate if you were diagnosed including blood work that was positive. All of the tests on my panel were positive by large numbers at diagnosis and over the next year, they went to very low normal for the ranges given. My GI sy...

https://www.ahealthblog.com/wp-content/uploads/Vitamin-Deficiency-Symptoms-Chart.jpg
What are you viewing this on? Looks fine on a computer screen, tablet...not so much. This is not a very comprehensive or detailed list either I really do suggest that app if you have constant iss...